title: Screening for hemochromatosis and iron overload: satisfaction with results notification and understanding of mailed results in unaffected participants of the HEIRS study.
abstract: OBJECTIVE
  The purpose of this study was to assess the level of satisfaction and understanding of test results, by a sample of non-C282Y homozygous participants in the hemochromatosis and iron overload screening (HEIRS) study, who received serum ferritin (SF), transferrin saturation (TS), and HFE gene test results by mail.
  
  
  METHODS
  Approximately 1 month after receiving test results by mail, participants were surveyed about understanding of and satisfaction with results notification.
  
  
  RESULTS
  Overall, participants were satisfied with receiving test results by mail. Participants receiving results with one or two HFE mutations or TS and/or SF levels outside the normal range (an "alert value") were less likely to be satisfied with this method of notification. Participants with normal HFE test results understood their results and recommendations better than those with one or two mutations. Although all participants received results letters in their native language, English-speaking participants had higher mean understanding scores than Mandarin, Vietnamese, or Spanish-speaking participants.
  
  
  CONCLUSIONS
  Participants were satisfied with receiving test results by mail. However, the level of understanding of the results was not sufficient for this mode of results notification to stand alone, especially for non-English speaking participants, and all participants with one or more test results outside the normal range.
authors.affiliation: Department of Medicine, London Health Sciences Centre , London, Ontario, Canada. hharrison@fanshawec.ca
authors.forename: Helen F
authors.initials: HF
authors.lastname: Harrison
authors.forename: Barbara W
authors.initials: BW
authors.lastname: Harrison
authors.forename: Ann P
authors.initials: AP
authors.lastname: Walker
authors.forename: Kurt
authors.initials: K
authors.lastname: Lohman
authors.forename: Shellie D
authors.initials: SD
authors.lastname: Ellis
authors.forename: Mark A
authors.initials: MA
authors.lastname: Hall
authors.forename: Jacob
authors.initials: J
authors.lastname: Reiss
authors.forename: Paul C
authors.initials: PC
authors.lastname: Adams
authors.forename: Joan
authors.initials: J
authors.lastname: Holup
authors.forename: Ronald T
authors.initials: RT
authors.lastname: Acton
authors.forename: Thomas
authors.initials: T
authors.lastname: Bent
authors.forename: Charles
authors.initials: C
authors.lastname: Rivers
authors.forename: Margaret
authors.initials: M
authors.lastname: Fadojutimi-Akinsiku
mesh_terms: D000328:Adult; D000368:Aged; D032882:Comprehension; D018563:Disease Notification; D005260:Female; D005293:Ferritins / Q000097:blood; D005820:Genetic Testing; D006432:Hemochromatosis / Q000097:blood / Q000175:diagnosis* / Q000235:genetics*; D000071020:Hemochromatosis Protein; D015395:Histocompatibility Antigens Class I / Q000235:genetics; D006801:Humans; D019190:Iron Overload / Q000097:blood / Q000175:diagnosis* / Q000235:genetics*; D008297:Male; D008403:Mass Screening; D008565:Membrane Proteins / Q000235:genetics; D008875:Middle Aged; D009154:Mutation; D017060:Patient Satisfaction; D011177:Postal Service; D011795:Surveys and Questionnaires; D014168:Transferrin / Q000378:metabolism
chemical_list: C103673:HFE protein, human; D000071020:Hemochromatosis Protein; D015395:Histocompatibility Antigens Class I; D008565:Membrane Proteins; D014168:Transferrin; D005293:Ferritins